Wednesday, December 31, 2014

December 31, 2014

Happy New Year!

As much as we were hoping to be discharged today, Lex had a fever again this morning which bought us another day. We did however receive the gift of a 4 hour day pass to run home for a bit which did wonders for our mental health. So, here we are, in room 585 ringing in the new year, wondering what 2015 will bring.

Praying for health and strength to endure the months ahead.
Much love to you all

Tuesday, December 30, 2014

December 30, 2014

It was bound to happen at some point ... We are in the ER - Lexie has a 102 fever and a severe headache. She will be admitted for at least 48 hours for IV antibiotics and blood cultures. But we are stuck here until the fever is gone and she won't be starting her next round of chemo on Friday.

Trying not to feel discouraged or worried but between the lack of sleep and all the baggage I carry its a struggle.

Please pray for Lexie's fever to break and a short hospital stay.
I'll keep you posted.
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Settled in our room. Encouraged by the good news that Lexie's blood counts are good! Her WBC is 2.5 and ANC is 1100 (for all my medical friends) which means her ability to fight infection isn't horribly compromised. And MAYBE we can stay on track and still get chemo on Friday. 
She started having severe headaches yesterday though so we are still trying to find the cause and she does need a blood transfusion, hopefully that will help her to feel better.
Lindsay's pace maker has been in constant use. The good news is that she has noticeably improved energy and endurance/tolerance to activity. It's remarkable! Honestly, it's amazing. She goes back on Friday to see if the pacemaker has to be adjusted or if her heart just really needs that much assistance. She is still having a hard time getting used to all the sensations in her chest ... She doesn't like it.
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This is so like God ... Knowing I needed encouragement today, I got a call from endocrinology and Mackenzie's growth hormone appeal was approved through insurance!

They said the approval was based on the "parent letter" I wrote which God equipped me to write through my nursing experience as a case manager. Amazing! We are still waiting to see what the co-pay will be, she said anywhere between $15-150 per month. Sure beats the $2000/month that it would have cost out of pocket.

God is so good!

Monday, December 29, 2014

December 29, 2014

Our 6th daughter arrived last night and is staying for a few days- love you Taylor Landwer!

We ventured out of the apartment today...

Praising God for the good report we received today on Taylor's nodes ... Healthy cells!

Sunday, December 28, 2014

December 28, 2014

Steve and I have been reading all the messages on the gofundme page together this afternoon. There truly are no words that could accurately express our gratitude to everyone who has financially contributed in our time of need ... those noted and those who anonymously donated.

When Lexie was diagnosed thoughts of losing our home, pulling the girls out of college and surmounting medical bills threatened to overcome us. I have no idea why we have been spared, why we have been immensely blessed, why we have had some of these burdens lifted when we see lives all around us crumble under the stressors of childhood disease. 

We feel undeserving of your generosity, but so thankful for the gift you have given us.
I can only conclude that God has chosen you and moved you to help in ways we never imagined. And we are in awe that you listened and moved to action. 

We pray that God blesses you ten fold through your desire to help and that one day we will be able to pay it forward! 

Thank you, from the depths of our hearts! 
With love and gratitude,

Saturday, December 27, 2014

December 27, 2014

Despite little sleep last night... We all woke up in our own beds.

Praising God that Lexie's temp is normal and she's feeling good today. Praying her bone marrow recovers quickly and her counts are good enough to begin the next cycle of chemo on Friday. She is scheduled to be admitted on Friday for cytoxan and ARA-C again. Labs on Wednesday and we ask that you pray specifically that her ANC is greater than 750 and her platelets are greater than 75. If they are lower, she will be off chemo until her counts improve. With every delay in her scheduled, the finish line is that much further away. Come on bone marrow!

Thank you Celine Bertrand for the fun care package and Melissa Doherty for the card from Canada!
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Shout out to the LFHS Varsity Boys Basketball Team for delivering more than a winning team! Your support for Lexie has amazed us and brought us much joy. We loved the inspirational quotes and the personal messages you sent! Although they were all good, we collaboratively decided our fave quote was sent by Scott Dent "It's not the size of the dog in the fight it's the size of the fight in the dog." ~Mark Twain
Props to Noah Karras for quoting Audrey Hepburn, we agree... It's better than Dr. Seuss!  lol

You're character on and off the court shines bright and we are proud of the example you are setting for others! Keep up the great work Scouts! No matter what your fighting for ... Whether it's a winning game or beating cancer ... It's ALL about the teamwork!

Support from the Scouts

Friday, December 26, 2014

December 26, 2014

It's been a busy couple of days.

We enjoyed a low key Christmas at our apartment. Thank you to the Mariemont community for the fabulous dinner and huge bucket full of goodies! We had so much fun going through the bucket and "trading/negotiating" for gifts with each other! We are so thankful for your generosity and support!

Also, thanks to Cindi Pieklo, Sue Hodgkinson, and the "Christmas in Wauconda" group for all of the Christmas gifts. Christmas would not have happened without all of you ... we didn't cook a thing or purchase one gift this year. It felt strange, but we are so grateful you all cared enough to provide us with the traditional Christmas experience. We will never forget this Christmas.

Also, thank you to the Wauconda Middle School staff for the generous donation and the Buchanan Family for the awesome "Ed stuff"! Literally, you can never get enough Ed! haha I'm so glad you've joined us in our obsession! Thanks for the adorable bracelet, btw ... I've been wanting one of those!

Lexie was in clinic today for another spinal and IV chemo. She's been feeling really tired lately, not sure if its just all the commotion of having her sisters around, the chemo or something else. For the past 7-10 days, she's also had weird symptoms like she's shivering and her teeth are chattering, but she doesn't feel cold and hasn't had a fever. We discontinued one of her medications with hopes this will help. Time will tell.

This evening we're a little on edge as Lexie's temp did climb to 100. Fever watch when your child is neutropenic is nerve-racking to say the least. If her fever hits 100.4 we will be making a trip to the ER and be admitted for IV antibiotics. Please join us in lifting Lexie up before our loving Father tonight and asking for more grace. NONE of us want to go to the hospital!

"Dear Heavenly Father, please forgive me for all my sins. I long to shed my sin stained nature, examine my heart and see the longing desire within to be more like Jesus. Lord, you already know my requests, but tonight I come before you and boldly ask that You would protect Lexie from all harm. Father be her thermostat and control her temperature, let Your mercy and grace be a blanket over her while she sleeps tonight and allow her to wake in her own bed, filter each cell through your hands and destroy any virus, bacteria or unhealthy cells. Lay your hand on her weakened body and command her bone marrow to recover from chemo pouring out an army of healthy cells to fight off any infection that poses a threat. Send angels to stand guard over Lexie and our entire family day and night. Be ever present here with us in Cincinnati and let Your presence be known. See our fragility and hold us in Your arms. Give us rest and let Your peace that surpasses all understanding overcome every fear that the evil one wants us to experience. Bind his evil scheming plan of attack and send him scouring far from us. We rebuke satan in the powerful Name of Jesus. Lord, we trust in Your constant care and we ask that You hear our prayers and move to actions tonight. We praise You and thank You for all that You have done for us and all that You are going to do. In Your Name we pray, Amen."

Wednesday, December 24, 2014

December 24, 2014

I know this post should be all rainbows and unicorns seeing that it is Christmas eve and our entire family is all together, but if I were to be completely honest with you I'd have to say that being together is awesome and wonderful, but it also brings a whole new set of stressors.

Having seven or more people in our tiny 2 bedroom 1 bath apartment at all times is hard, having Lexie on edge and sensitive to things the other girls say ... things that normally wouldn't bother her but now do is hard, having the other girls not understand why Lexie is different and how their actions and words effect her now is hard, having Mackenzie seemingly extra needy and emotional because she is used to being the center of attention and has now dropped off the radar is hard, having to constantly care for so many sick children is hard.

Every emotion around me feels heightened, but right now I feel emotionless inside. It doesn't feel like there is enough of me to meet the demands and needs of our family. Actually, I know there is not enough of me which is why I am utterly dependent on God. I woke up this morning and the first thought on my mind was "I don't want to 'do' today"!

Sometimes I dream about waking up with amnesia, and having a fresh start, a "do-over". The strain of living in this fallen world as well the stressors that are on me today make it difficult to resist the temptation to feel sorry for myself. But I am choosing to recognize and rejoice in my utter dependence on God. The world applauds self-sufficiency, and that is partially what makes it feel so hard right now, but I know God says "Blessed are the poor in spirit, for theirs is the kingdom of heaven" (Matthew 5:3). I am acutely aware of my insufficiency and I am choosing to fix my gaze on the blessings that have been given to me and rejoicing with thanksgiving... this is what being poor in spirit is all about.

Taylor and Steve left at 5am this morning for what we refer to as the "drive thru surgery". They drove straight to the hospital in Chicago. Taylor had 2 large lymph nodes removed, recovered from anesthesia, got back in the car and drove back to Cincinnati by 9pm. Praising God that surgery went well! Taylor is feeling sore and nauseous, so I ask that you join me in praying for relief of these side effects of surgery. We should have results on the pathology of the nodes on Monday or Tuesday. Please pray for healthy cells!

Lexie had her labs drawn today and we are thankful that her blood counts look pretty good. No blood transfusions will be needed this week! Praise God!

Lindsay is looking forward to the best gift ever this Christmas ... a shower! She has had to keep her incision dry for 7 days so bathing has been challenging! She continues to feel good and is adjusting well to her pacemaker. Praise God!

Praising God tonight for the plan He had for a Savior, a baby born in a manger. So grateful that He loved us enough to let His son, His baby boy suffer and die for our sins. So thankful that He saved us by grace, through faith. Grace and faith are both gifts ... it is our part to be receptive and responsive to these glorious gifts.

I hope you all find grace and faith and receive the gifts God longs to give you.
Wishing you all a very merry Christmas and wonderful holiday season!

Much love to you all!

Monday, December 22, 2014

December 21-22, 2014

Lindsay and Lexie chillin' with Lexie's friend, Mia ...
This is one of the best gifts to our family and such a cool video! Regina was our au pair when Mackenzie was sick and going through treatment for leukemia. She will always be part of our family!  She made a video that you can see if you click on the image ...

Special thank you to Jonathan and The Simple Portrait Project, Lohre Studio and Maggie Brennan with Cincinnati Childrens Champion program for the priceless gift of family photos! Amazing memories made today!

Much Love,

Friday, December 19, 2014

December 19, 2014

Lindsay continued to throw up last night until she fell asleep. She had a quiet night and slept well but continued to throw up this morning. We are unsure at this point if she will be discharged today. Hoping and praying she will start tolerating food and drink so we can get out of this place!

Taylor saw ENT this morning for enlarged lymph nodes. Her mono test was positive ... We were super excited to find a cause or "reason" for her nodes. Unfortunately since she's had them for several months, and been asymptomatic, the ENT said given our family history it would be negligent not to remove the nodes. So, Taylor will be having surgery for an excisional biopsy on Christmas Eve. Please pray the pathology would reveal healthy cells! Our plate is full.

Lexie did great with her spinal and is tolerating her chemo today. 

Praise God for answered prayers. 

Please continue to cover us with prayer. I am hoping to head back to Cincinnati tomorrow.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
I'm at the pharmacy waiting on prescriptions so just a quick note to let you know we are home!!!

Lindsay is doing really well! Still adjusting to weird sensations in her chest when the pacemaker kicks in but what a trooper! She has an appointment tomorrow morning at 10am and then we are hoping to head back to Cincinnati.

Lots of running around to do between now and then, will post more soon.

Can't thank you enough for your love and prayers! Best gift of the season ...TOGETHERNESS! Not only to get our family together but also to be on the battle field together with all of you! I can't imagine doing this alone! You have blessed us richly by joining us on this journey. Thank you!

Check out the article written about last week's game at Lake Forest High School where they helped raise funds for Lexie and the family ...

Thursday, December 18, 2014

December 18, 2014

Just arrived at the hospital after a whole 7 hours at home, 4 hours of sleep.

Steve is currently at the dentist having a crown put on, friends/family will be here later this morning and I have to get Taylor to a 2:45 appointment this afternoon.

The past 24 hours have been rough. When it rains it pours ...

It was hard leaving Lexie and Mack in Cinci.

Yesterday I lost my purse (thankfully found it) started having car trouble as I was taking off for Chicago so rented a car at the last minute, horrible construction near Indy adding an hour to our trip, the cable went out, the cat puked twice. 

You name it... It was bound to happen. Despite all that it was still great to walk in the door and see Lindsay, Kali and Steve! 

Please pray this morning for wisdom for Lindsay's surgeon, for God to guide and direct his hand right to the pacer wires without having to open her breastbone. 

Praying there will be NO need for a chest tube post op, protection from human error, for angels to hover over the operating room, for satan to be bound, minimally invasive procedure, that the pacemaker will actually fix the problem and alleviate Lindsay's symptoms AND already praying for discharge TOMORROW! 

I'm reminded of the poem my good friend Heidi wrote 17 years ago:

If you listen very quietly you might just hear their wings
I've been walking with my Jesus and He's telling me these things

That there's Angels all around me to protect me from all harm
Within their wings I'm hiding and I'm sleeping in their arms
So be patient, wait on Jesus for you know right from the start,
It is God that walks beside me and he holds my special heart!!

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And she's off... Just sent Linds to the OR. Please cover us in prayers. Surgery expected to be 2-3 hours. I'll keep you posted as I receive news

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Just got word from the OR ... They found the wires and they look good! Praise God! OR nurse said she wasn't sure but it looked like a very small portion of the bottom of the breastbone was open but it was minimal. Still unsure if she will need a chest tube or drain. So far things are going smoothly ... Keep praying!!!

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Out of surgery! Still in recovery. Haven't talked to doctors, but appears everything went as well as possible. No drainage or chest tubes. She should be discharged tomorrow if things continue as is. Please pray for a quiet night. Will update when I know more..

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Here's what we accomplished today... Steve survived his crown at the dentist this morning, Lindsay was "the easy case today" (which is a first for us!) and flew through heart surgery/ pacemaker placement like a champ, Taylor saw the doctor, had labs drawn and a chest X-ray done (seeing ENT tomorrow) and Lexie had labs drawn and is plowing through her chemo schedule! That was a marathon day and your prayers carried us!

Lindsay is doing well outside of the puking from anesthesia and sore chest. They opened a small portion of her breastbone, found the wires, attached the device and implanted it in her abdomen. Apparently everyone celebrated in the OR when they determined the wires were still "good". I had no idea there was a chance they wouldn't be good and it's a good thing. They had prepared to open her entire breastbone, replace her homograph and valve, place new wires and device. 

Praising God for the mercy in the unknown and that none of the above was needed!

The first thing Lindsay said to me when I got back to her room was ..."so apparently I had a really hot doctor while you were gone, but he came in after I threw up and I had dried puke all over my neck.... That was unfortunate!" Ohhhh Linny! 

We are still on track for discharge tomorrow! 

Thank you so much for your incredible support today. 

Lexie will be in clinic for another spinal tomorrow and then head to day hospital for 2 IV chemo's. 

Please pray specifically for tolerance to these chemo's. No blood transfusion needed this week. Praise God!

Wednesday, December 17, 2014

A Note from Lexie ... December 17, 2014

Hey everyone it's Lexie!

Well a lot has been happening, or at least it feels like a lot.

So tomorrow I have to get up early (gross) to get labs done to see if I need blood and to just see how my counts are.

Also, Lindsay will be having her surgery and Taylor has doctors appointments. Busy day tomorrow!

I'm super paranoid that I have a fungal infection in my lungs which is kind of irrational seeing as I have no symptoms, but I'm convinced it's true. And of course, as my fear grows, mom leaves for Illinois, but she is needed down there.

Not much is happening here. I just finished a puzzle if that counts for excitement.

Oh, I have to get another spinal done on Friday, which normally wouldn't faze me, but last time they did it they must've hit a nerve or something because theres a jolting pinch nerve in my back where the needle was. But only one more after this upcoming one!

I got a card from Scotland today which was pretty cool.

Moms car wasn't working right so she had to go home with Taylor in a rental. Yikes.

And thanks to Cardon Childrens, Kelly Kunningas and her family, Lisa Wagner, and Laura MacDonald.  You guys rock.

So I think thats it for now! Keep up the prayers!

December 17, 2014

Just got a call from the hospital.

Lindsay has surgery tomorrow at 9:30am.

Today has been extremely stressful. I feel like we've been under attack.

Please pray for God to bind satan for Lindsay's surgery and Lexie's procedures on Friday.

Your prayers are carrying us right now. More tomorrow...

Tuesday, December 16, 2014

December 15, 2014

Today we are grateful for a quiet weekend and the last dose of ARA-C ... until next month anyway.
So thankful Lexie continues to feel well without fevers. Amen!

School has been a very positive experience for her, Lexie ADORES her teachers. She has two teachers that meet with her daily at the hospital and she actually looks forward to going!!! We are so thankful for the investment they are making in Lexie's life, not only academically but also socially and emotionally. What an incredible blessing they are to her!

My dad, Taylor and Mackenzie are coming down this evening and we are stoked to have company. 
Still waiting to hear about Mackenzie's appeal to the insurance company for growth hormone, tomorrow she has more thyroid labs ordered. 
Lindsay's heart surgery will be Thursday afternoon. Still no time slot but sounds like she will be last case so late in the day Thursday. Continued prayers that God would orchestrate timing and a room for Lindsay. Apparently the hospital is so full that she will most likely go to the adult hospital post op. It makes me feel uneasy because medical care in the adult world is completely different than pediatrics and it's generally not for the better. 
Asking God in advance to choose a room and a team of competent doctors and nurses to provide Lindsay with the best possible care wherever she ends up post-op. Now just trusting in His care and waiting to see how it all unfolds. 
Please pray for all the details surrounding Lindsay's and Lexie's care. 
Thank you to the Burkhalter family for the goodies that arrived today! I'm stealing the chocolate! 
And thank you to each and every one of you who goes before the throne of our Savior interceding on our behalf. 
Your prayers are the greatest gift possible!

December 13, 2014

The days are moving along and going by faster now that we are into a routine here in Cincinnati.
I can't believe we have been here 7 weeks already! Not that I want to "lose" time, but sometimes I wish I could fast forward a little. I'm anxious to get through next week.
Having the tangible "unknowns" hanging over us never feels good, but I try to remind myself that we are no different than anyone else. Tomorrow is not a guarantee for anyone. Because of all our "in your face" realities", we've been intentional about looking for the blessings in each day. We would have missed out on so many blessings, blown by them without notice or acknowledgment, overlooked them without appreciation and never soaked up all the things God has given us had we just been busy "doing" life in an ordinary fashion. We see things from an eternal perspective, and it changes everything. I am grateful for that gift.

My devotional today read:
"Hope for what you do not see; eagerly wait for it with perseverance. Among the five senses, sight is often the one that people value the most. I created the world gloriously beautiful, and I want you to appreciate beauty when you see it. However, even more beneficial than sight is hope, which is itself a kind of vision. It enables you to see - through the eyes of your heart - things that are not yet. Train the eyes of your heart to "see" these blessings, while praying for My will to be done. Discipline yourself to wait eagerly - with your focus on Me and the longed-for outcome. Remain hopeful and expectant as you wait with with perseverance."
Please continue to pray for protection over both Lindsay and Lexie. 
Specifically pray that Lexie will remain fever free and be protected from all infections. And that Lindsay's surgery would be minimally invasive, that doctors would be able to easily access her pacer wires without too much dissection and that God would be in control of her heart rhythms, squeezing each beat with His righteous right hand allowing her heart to rest and heal.

A very special thank you to Wauconda Grade School staff and students for all their efforts in making the Bell Fundraiser such a big success. I continue to have difficulty finding the words to say Thank You! We are so grateful for your love and support!
Also, want to thank Heidi Shor for the good laugh! I was forced to tell the gummy bear story yet again! Lexie is totally fired up about the book and has been reading ever since it arrived. 
Thank you Emi Kopke for the cute care package but we are even more grateful for the amazing words you wrote. Your letter meant so much to me and Lexie, honestly!
Thank you to Jacob Moore for yummy snacks and his girlfriend for the great artwork for Lexie's walls which we've already hung! 
Thanks to the Childhood Leukemia Foundation for the care and support they provide to children across the country. You make a difference! 
And thank you to our Great God who's grace is sufficient, who loves us more than we could fathom, who infinitely knows and understands our circumstances and who's faithfulness has withstood the test of time. 
We are blessed beyond measure!

Saturday, December 13, 2014

December 12, 2014

Spinal done, getting blood then chemo. Long day.

(Lexie scolding me for taking a pic ... Haha)

Thursday, December 11, 2014

December 11, 2014

Got an unexpected call from Lindsay's surgical team today informing me her surgery has been scheduled for next Thursday. Looks like I will head back to Chicago on Wednesday afternoon. 

Going to clinic bright and early tomorrow, 6:30 am, for Lexie's spinal and 2 IV chemo's; methotrexate in her spine and IV ARA-C. She will get three more doses of ARA-C at the apartment over the following 3 days.
PLEASE pray for protection against all fevers, especially while I'm out of town. 
Lexie's blood counts are plummeting (as expected), but it makes me feel uneasy reliving Mackenzie's past and knowing how vulnerable Lexie is to infections at this point. 
Please join me in praying for protection from all infections. Her hemoglobin has dropped again, down to 7.7 so I'm assuming she will get another blood transfusion in clinic tomorrow. Despite it all, Lexie is feeling good and we are thankful for every day that she feels well!

Thank you to The Clark Family, Wauconda Middle School Staff (we're ready for a snowball fight to take out some aggression! haha), Alyssa McCarthy and Lacey Lewis! 

We are so grateful for the fun mail and care packages! 

You guys continue to amaze us with your unwavering support. 

Much love from Cincinnati and more tomorrow...

Wednesday, December 10, 2014

December 10, 2014

I'm not sure where to begin, our emotions have been all over the place today. When I woke up this morning I didn't feel like facing the day, I wanted to pull the covers over my head and sleep it away. 
After many discussions with Lindsay's cardiologist and electrophysiologist over the past two days it was decided that Lindsay cannot wait any longer for her surgery. She was scheduled for heart surgery this Monday, but when Lexie was diagnosed we asked if we could postpone it until we got through some of the intensive treatment for Lexie. That was the plan. 
But Lindsay began having new symptoms and everything changed. I don't have many details other than I know she will be an emergency "add on" to the schedule since we gave up her scheduled surgery slot. They will call me on Monday and the surgery will take place on Tuesday, Wednesday or Thursday next week. Since Lindsay's team of doctors are at Hope Childrens in Oak Lawn, IL, I am planning on coming home the night before her surgery. Lindsay has developed a condition called Sick Sinus Syndrome and her SA node (the body's natural pacemaker) is failing. 
She will be having a pacemaker placed, which normally is not that big of a surgery and usually done through cardiac cath, but because of the complexity of Lindsays heart, it appears they will need to open her breast bone again to gain access to the pacer wires she had placed during her last surgery. They won't know how extensive the surgery will be until they get in there.
Please pray that it will be minimally invasive and she would only have to spend a night or two in the hospital so we can all get back to Cincinnati to be together as quickly as possible. 
Also praying for continued protection for Lexie while I am back in Chicago. We threw out our plans for everyone's "comings" and "goings" over Christmas break and are back to figuring things out one day at a time.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Lexie has been doing really well this week. She has had more energy and is beginning to lose some of the steroid puffiness. It's exciting to see her begin to morph back to herself ... minus the hair. 

She gets chemo in her spine on Friday and starts 4 more days of the ARA-C. 

Extra prayers for NO FEVERS! From past experiences it seems like satan attacks when we are down and vulnerable ... please pray that God would bind satan and send angels to stand guard all around us during the next couple weeks. 

Clearly I cannot be in two places at once, but my heart desperately wants to be there for both girls. Remembering He is in control and trusting in His constant care.

So after processing the emotions of the day, God's grace washed over us in a profound way this evening. 

We got to watch the Lake Forest basketball fundraiser livestream from Cinci and were overwhelmed by the outpouring of love and support. It was such a joy to witness a community of people coming together and students rallying in support of Lexie. 

It was an amazing example of servanthood. A tangible expression of people taking care of each other. A model for all communities. I can't find words that can express how deeply this has affected us. 

We are in awe of everything that has taken place this evening and feel incredibly blessed to receive God's provisions for us in ways we could have never dreamed of. 

We would like to thank Lake Forest High School, LFHS Boosters, Phil LaScala and Kyle Wilhelm, the boys and girls basketball programs, Tim Burkhalter, everyone who participated in the event and the entire Lake Forest community. You have gone above and beyond for us time and time again. I am moved to tears and so thankful that the community has never given up on their support for our family. The LFHS community continues to rise to the occasion, no matter how deep, dark and long our valley goes. You have carried us when we couldn't make it on our own. You have helped alleviate more burdens than you will ever know. Our hearts are full of gratitude and thanksgiving and we are proud of the incredible example you have set. 

I pray surrounding communities will follow in your footsteps and help other families in need.

Watching the LF Basketball game live from our apartment in Cincinnati. 

Thank you Lake Forest Scouts for modeling a compassionate community for all to see. What a impressionable example you have set! 

Your amazing support for our family and your servant attitude has not gone unnoticed. And your relentless efforts have alleviated a portion of our burdens. 

We are encouraged by your support!

Tuesday, December 9, 2014

December 9, 2014

Great article, amazing community, tangible example of Gods family taking care of each other! Thank you Chicago Tribune for sharing this story!

Click on this photo to read the article from the Chicago Tribune's News Sun division

Great article, amazing community, tangible example of Gods family taking care of each other! Thank you Chicago Tribune for sharing this story!

Stevenson Basketball tweeted the following a short time ago: "@LFHoops Although we can't attend, our staff would like to support Coach Johnson and his daughter. Any t-shirts left that we could purchase?"

Thank you to everyone who has continued to help our family over the last few weeks.  We could not have done it without your love and support!

Monday, December 8, 2014

December 8, 2014 ... and a Note from Lexie

It's Lexie and we have just received packages!

Big thanks to Yolanda Moenning and her sons Ben and Tyler for their thoughtful gifts!

And aunt Judy and uncle Bill- thank you so much for all of the Ed stuff(:

Andrew McMahon, that movie looks super good and relatable, so thanks for that!

Thank you to the Seiler family for the care package, it was so cute!

The final package of the day was from Allison Stiegler; thank you for your thoughtfulness and prayers!

The packages have reminded me that God is in this and is actively moving people in a way that only He can do.

We are feeling the love here in Ohio!

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Wow! We received the most amazing gift today ... the gift of words from 11 and 12 year old children. I'm still emotional and have goose bumps running up and down my spine. Thank you so much to the Lake Zurich YMCA for taking the time to s...hare our story with your kids. They have moved us in ways we have never been moved. I think there is something about a hand written letter that has been lost in the world we live in today. We are in awe of the heart felt, meaningful messages they wrote. We laughed, we welled with tears and we gushed with gratitude. I have to share a few excerpts from the letters:

"I hope you have a chance to see your family sometime soon and just never, and I mean never ever, give up just because you think the world has stopped. Because it hasn't!!! It is just waiting for you to get better and blossom into a beautiful girl."

"I just found out that you have a certain form of cancer but that also doesn't mean that you get disconnected from people that love you. Yes, you may think that 'well I don't know this person', but that doesn't mean I still can't care for people that I want to care for, like you."

"I want you to know when I heard your story from a YMCA counselor I was woken up. In a 'normal day' you don't think of all the people who are hurt or have cancer. But they are there."

"I want you to know that there is still hope and that God is with you always and forever, and always smile and spread the love, the world needs it!"

"I'm not super, super religious, so I can't be consistent with praying, but every time it turns 11:11, I will add you to my list of things I wish for."

Last but not least... we seriously laughed out loud ...

"So, how was Thanksgiving? Mine was good my favorite was the mashed potatoes. They were so creamy oh, and the gravy really drove it home!"

God is SO good!
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We made it through 4 days of ARA-C without fevers!!! Three days off and then we do it all over again starting Friday. Continued prayers for protection and no fevers.

"Dear Heavenly Father, I come before you now in awe of the incredibly intricate tapestry you are creating with our lives. To see you move people, intertwine lives and draw people to You in order to provide for our needs and bring glory to Your Name is awesome. 
It is such an honor to be chosen to shine for You through our seasons of medical hardships. I have no idea why we have been chosen, I am just an ordinary mom who loves her family ... but one day I will see both sides of the tapestry and understand Your perfect plan. To be broken, surrendered, moldable and totally dependent on You is a life changing gift because it is the most sacred place to experience Your intimacy and I can't get enough of it. I long for more of your undeniable presence in our lives as You reveal Yourself in so many ways. 
I love You Lord, with everything I have and everything I am. I praise You Father for all that you have done, all that you are doing and all that your have planned for our lives. God, I ask that You would supernaturally bless those who have stepped out in faith to support us on this journey. Reveal more of Your attributes and help us all to know You more. Continue to place a hedge of protection around Lexie and regulate her body temperature so that she never has to be hospitalized for fevers. Thank You for destroying the cancerous cells that threatened to steal years from our sweet Lexie. Command her bone marrow to produce only healthy cells and filter each cell through Your hands. 
Thank You for the gift of mercy and grace that You have given us beyond what we could imagine over the last six weeks. I feel so undeserving of all the blessings You have given us, but my heart explodes with gratitude. Thank You for the gift of five amazing daughters that I love more than my words could express. And thank You for choosing me to walk the path You have set before me. I love You and Praise You. 
In Jesus Name, Amen."

Saturday, December 6, 2014

Pampered Chef fundraiser closes 12-16-14

Jodi Ebert is setting up an ONLINE Pampered Chef Fundraiser ---Please read below!!!

To help raise money for my sweet friends, Amy Meyer- Johnson, and Steve Johnson whose 3 out of 5 daughters have MAJOR health issues. The bills are adding up!
Here is the link if you would like to order Pampered Chef for Christmas gifts to support a GREAT cause!!! 15% of any money will go straight into the:

"Hope for Lexie" Fund
c/o Wauconda Community Bank
495 W. Liberty St.
Wauconda, IL 60084

The sale ends on December 16th and you will get your items by Christmas!!!
CLICK this link to order!

For any questions regarding this fundraiser, please message Jodi Ebert through Facebook 
Thank you,


December 6, 2014

All is well in room 580. 
Lexie tolerated her chemo yesterday. Praise God we are so thankful for His watch over Lexie. She will continue to receive fluids most of the day today to protect her kidneys and bladder from the cytoxan infusion she received yesterday. She will also receive a blood transfusion which runs over 4 hours. We're hoping to be discharged sometime this evening. 
The infection on her leg is clearing up and responding to the antibiotics ... another direct answer to our prayers! She will receive another dose of chemo called ARA-C today and two more at the apartment (tomorrow and Monday). This chemo is notorious for causing fevers. If Lexie spikes a fever, she will not be discharged and if we are home, she will have to be re-admitted to rule out infection. Unfortunately, we endured this path on many occasions with Mackenzie and I am anxious about reliving those experiences. Please join me in praying for protection from all fevers over the next 3 days. 
Waiting, watching, monitoring for fevers is an apparent trigger for anxiety for me. Knowing the stress of being on "high guard", knowing the medical staff becomes very cautious/anxious with fevers and knowing that fevers can be a source of infection which may be life threatening for kids who are immunosuppressed makes my mind spiral to places I don't want to go. I can feel my heart rate increasing and the pit in my stomach forming just writing about it. So I'm choosing to meditate on this devotion today:

"Make Me your primary focus. I am all around you- constantly aware of you. I take note of all your thoughts and prayers. Many, many things vie for your attention, but do not let them crowd Me out. Directing your mind toward Me requires very little energy and is imperceptible to others. Yet the more often you do this, the more fully I can live in you and through you.

Remember that I am present with you each moment of your life, watching over you with perfect Love. In fact, My unfailing Love surrounds the one who trusts in Me. I am training you to be increasingly aware of My loving Presence, even when other things demand your attention. I want to be the constant in your life that provides stability and direction in an unpredictable environment. Since I am the same yesterday, today, and forever, I can be the fixed point that helps you stay on course as you make your way through this ever-changing world. As you keep redirecting your thoughts to Me, I will show you the way forward - and I give you My Peace."

~John 14:27 
Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.
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Appearing scared I asked, "Lexie what are you so worried about?" She replied, "anaphylactic shock!"... Only the Johnson family ...
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We're home and super excited that our friend Kara Gitskin is spending the night with us! 
Pizza, movies and guaranteed laughter ... Thank you Elise Moore and family for delivering a perfect snack just in time for our movie night tonight! And thank you Susan Hodgkinson for your care package and perfect lounge pants to get comfy... although Steve may burn them. #govikings 
Lexie is doing really well considering all she has been through in the past 48 hours. Two units of blood and Lexie has pink cheeks and renewed energy. 
Please continue to pray for no fevers, your prayers bring us much comfort. 
Please also check out the Mackenzie tab on top which gives a brief glimpse into our ordeal with Mackenzie as she was going through her treatment through the Caring Bridge link.

Friday, December 5, 2014

Scarves, Anyone ?

Lexie’s aunt, Sara Plucinak of Minnesota, is making infinity scarves to help raise money for Lexie and the family.  Here are some samples so far of what she’s made, and the yarns she has.


If you’re interested, please send an email to Sara at
The scarves are $20 and can be shipped to you if you aren’t local to Sara in Minnesota or Wauconda for an additional $5.00 paid separately.  All proceeds will go to Lexie and the family.

Great for holiday gifts, too ... you could knock out two birds with one stone by crossing someone's name off your to-do holiday list and help the Johnson family in one fell swoop.

Thank you so much again for helping us care for Lexie and her family,